Living In Defiance Of Early-Onset Parkinson's Disease

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Self-Preservation

I have early-onset Parkinson’s disease. No one knows what causes Parkinson’s, but mine was likely caused by a succession of toxic chemical exposures while I was on active duty as a US Air Force officer. I’m not angry about it – no one forced me to serve in the military, and I am still proud to be a veteran.

I try to maintain a positive attitude and a hopeful mindset, because I believe that a person’s mental and emotional approach to adversity is critical. Besides, if given the choice, why would anyone want to spend their life angry and despairing about things they cannot change? Even for those things that you can influence, I personally don’t believe that anger, hate, and derision are good tools to “win hearts and minds.”

I think I do a good job of managing the challenges that come with my life. I often wake up in the morning (assuming that I’ve been asleep; not always a good assumption) unable to move effectively, and it can take as much as an hour for my morning handful of medications to have an effect. Most of the time I just wait it out, and eventually I loosen up and I’m able to use my legs, hands and arms well enough for a shower.

Occasionally, I lose patience with the wait, and I self-administer a shot of apomorphine (not nearly as much fun as it may sound). One of the side effects of this medication is severe nausea and vomiting, and the usual drugs doctors use to manage these side-effects don’t work well for a PD patient, because they have an adverse impact on dopamine levels in the brain. There is a drug that works, but it’s not available in the US.

For the rest of the day, I live on a teeter-totter of medications. If I time the doses right, I am mostly functional, but not always – as little as 15 minutes delay in a dose and I can tumble down into a state that we people with Parkinson’s call “being off.” All the symptoms of PD come roaring back, accompanied by a medication side-effect called dyskinesia. I don’t have to miss a dose for this to happen, though. Sometimes it happens without warning – PWPs call that an “unexpected off.” It’s disconcerting and uncomfortable, but it’s just the way it is.

As I balance on the medication teeter-totter during the day, I try to live my life. I go to the shooting range, I write, I meet with friends, I go to Rock Steady Boxing, physical therapy, occupational therapy, speech and swallowing therapy. I speak at support groups, I go to board meetings for SA Moves (the educational foundation that I lead), I run errands, I go to the grocery store. If I go off, I do what I can to get back on. And I remind myself that others are living with challenges more severe, more taxing, and more intractable than mine. A positive attitude is not only helpful to me – it’s absolutely essential. I literally could not get through the day without it, and I find that I have to limit my exposure to people and situations that drain my positive energy.

As a result, I’m taking a break from social media. I stay in contact with many people who I value and enjoy keeping up with through Facebook, but the price has become too high. I have an email address and a cell phone – text, emails, and phone calls still work, and I don’t intend to become a hermit. But, the only thing I’ll use Facebook for is to publicize new posts on The Crooked Path. The constant stream of hate and anger on Facebook is detrimental to my well-being – I am disciplined enough to not let attacks directed at me have an impact, but I am not evolved enough to ignore the stream of hatred directed at people I love who happen to have strong political opinions. I feel like retaliating, and I just don’t have the extra energy to spend on combatting my desire to strike back.

Perhaps I’ll be back; perhaps I won’t. If you’d like to comment, please do it at http://thecrookedpath.net. Comments on Facebook will go unread and unacknowledged.

“A positive attitude is not only helpful to me – it’s absolutely essential. I literally could not get through the day without it, and I find that I have to limit my exposure to people and situations that drain my positive energy.”

Until I read your precise words, I didn’t realize how much I’ve adopted the same philosophy.

Since I’ve elected to live in an isolated setting, I appreciate the social part of social media but no longer tolerate the anti-social aspects.

I’m still working on the “positive attitude” but have called on yours a lot this past year as we’ve juggled keeping my independence with independence meaning working as a pair rather than alone.

Hi Corey, yes, social media can be an insidious evil, providing a cowardly channel for the cold hearted, small minded folk at large. I completely understand your situation and look forward to continued constructive sharing on this blog. God bless.

Corey, I agree with your common sense approach (which has been my opinion of social media from the get-go). For the most part, I have felt that FB inadvertently boosts egos and deflates those who are only observers. Sometimes it seems to reflect the old, uncomfortable game of cliques.

I hope that Prez and I will see you and Amy sometime at a Campanas event. We so enjoyed our interactions with Jeanette and her husband (Gene?). I am glad you are still posting your reflections on your blog; they are truly enjoyable and newsworthy.